So my goal of adding a blog post every day, was interrupted by Kawasaki Disease. One of the SCARIEST times in my life. My three year old had been having high fevers, so I automatically took her to the Dr. They said "its an ear infection"... okay. Ear infection it is... give antibiotics and Tylenol/Advil... The same night I couldn't get her fever to break (it was 104) and I was worried sick, and ear infection had never done this. So we go to the ER. They look at her ears, say "yup its an ear infection, you just have to give the antibiotics time to work"... Okay... something just didn't seem right to me, because I have always been able to get her fevers down even a couple degrees and this sucker just wouldn't budge. I wait a day, nothing. So I call the doctors answering service the next day, because by now she also had started throwing up a few times, so that could mean the antibiotics weren't working, she wasn't eating, or drinking, or doing much of anything. He says to bring her in in the morning. You got it. While there the temperature is 103. See and I gave her Advil doctor.. something isnt right I say. He says you're right, and her ears don't look too bad to me, so take her back to the ER so they can hydrate her and run some labs. We get there around noonish... They hook her up to an IV, which she didn't fight, she just lay there, helpless. She was so tired from not sleeping all week, and dehydrated, she just didn't have the energy to fight it. They run x-rays on her, blood-work and then wait. Hmm, labs come back that her liver tests were really off, but that none of the other labs coincided and made any sense. We'll do an ultrasound of her liver... Okay... lets do it. Results-nothing.. liver looks great. More labs come back.. still can't figure it out. "we will probably just send you home its likely JUST A VIRUS" then another lab came back with some abnormal results. "I'm going to call in a pediatrician because they deal more with children and childhood illnesses, I think she can be a help"... AND SHE WAS. She saved my daughters life. She ran some more blood work, realized that the lymph nodes in her neck had grown so large since we had GOTTEN there (they weren't big before) and they were red and rapidly growing. She said lets admit her, watch her and run some more tests. YOU GOT IT LADY, whatever we have to do to fix my baby I said. So around 12 midnight we get admitted, and around 1am labs come back, her Sed Rate was off the charts. She explained that this means SOMETHING in her body is inflamed and we don't know what but we are going to send her to the children's hospital. They gave her a big dose of broad spectrum antibiotics (because she is allergic to so many). Okay... the tears just roll out of my eyes... What is wrong with my baby that all these doctors seem scared of and can't figure out. What is wrong with my baby. The ambulance comes to pick her up around 2 or 3 am... the time was blurry. They put my baby in the back of the ambulance, I could ride but had to sit up front. She screamed almost the whole 2 hours we were in that ambulance, and I just cried and tried to talk to her to reassure her that it was okay. Meanwhile, thoughts of anything and everything ran through my head. My husband followed in the car behind us. We arrive at the hospital, are placed in an isolation room, and there doctor after doctor and nurse came to see us. Ran even more tests... Still... nothing, she only had the lymph nodes, and somewhat red colored eyes like bloodshot, which to be honest we chalked up to not sleeping in days. Later on that evening they gave us a bigger room (we were in a sort of makeshift closet room). In there she is a little more content, LITTLE. (I also forgot to mention she just cries and cries and there is no consoling her because she doesn't KNOW what doesn't feel good she can just say I DON'T FEEL GOOD.) She gets a TV, and we watch Go Diego Go... the rest of the night. The nurse comes in to check her temperature and says "has this rash been here?" and shows me her neck. I look and say "no.. it was red but not like that." so I begin to undress her and see her chest, back armpit (not both), hand, groin, privates, are covered in this blotchy red rash. She also had a white film on her tongue. This they assumed was from the big dose of antibiotic and thought it could be thrush. They tried to give her Nystatin but to no avail would she take it. We get through the night, the next morning one of the doctors (who I also credit with saving her life) looks at her, looks at her tongue which is not so much white anymore, but red and bumpy... says "I want to get a second opinion from the Infectious disease doctor, but I am leaning towards this being Kawasaki Disease." "Kawawhat?" He explains it to me and my husband. Im terrified, because we don't know exactly how long she has had this and the outcome of this disease isn't always pretty. She already has a heart problem to begin with, oh my gosh, this poor baby. Later on that night the ID doctor comes and sees her. She confirms that she definitely thinks this is Kawasaki disease, we will begin treatment immediately and will have an Echo-cardiogram done in the morning. I am relieved to finally KNOW whats wrong with her but I am scared out of my mind for this echo to be done. They give her the IVIG treatment starting around 10pm... It lasts for hours because it has to be on such a slow drip. During the treatment she is feeling a little better, calmer. She still can't turn her neck, is still having diarrhea, still wont drink, and still has a 104 fever, but she isn't hysterical anymore. I expected the IVIG to be this miracle drug, we were going to wake up in the morning and she was going to be all better... I was wrong. Apparently it does work for some like that, but it didn't for us. We get the echo... GREAT NEWS no aneurysm. What a relief. But the IVIG didn't take. after 48 hours they decided to do another round of IVIG. This time... much better. She wants to get out of bed and play in the playroom, color and watch Go Diego Go (he was her life support, she watch the entire 1-4 seasons during our stay and NOTHING ELSE), she just doesn't want to drink or eat. They say this is quite normal, but she has drink if she wants to go home. she finally starts to drink Gold Peak Iced Tea... was the only thing we could get into her, so we made sure we got it for her. After 48 hours after the second IVIG, the doctors all come to say YOU CAN GO HOME. GREAT! She was placed on high dose aspirin (which was a little scary). she took 16 81mg chewable aspirins a day for two weeks. (4 every 4 hours during the day). This was quite a challenge at first. She didn't like the taste of them at all. We tried applesauce, crushing them and putting them in liquid, pudding, nothing... so we got her YooHoo. She would take one chug yoohoo, take the rest the same way... Whatever works. She was still cranky still miserable, but better. After two weeks she started to take just 1 81mg aspirin a day. MUCH EASIER. She has a follow up with a cardiologist soon and is doing TONS better. Pretty much back to herself. She still has some crying jags where we don't know whats wrong but they go away quickly and that can also just be a typical 3 year old.
I urge every parent to look up and get the basic information on Kawasaki Disease. It could save your child's life. It is misdiagnosed and sometimes can be too late. It can be fatal, and it can have life long lasting consequences such as heart disease, and things like that. Its scary. So just inform yourself. Being informed is the best thing a parent can do for their child. The more you "know" about things, the better off you will be. With things like Kawasaki.. most people haven't heard of it, most people don't jump to conclusions and say "that must be Kawasaki", because it can mimic other things in the beginning. They say it has a very low chance of coming back, but it is possible . I think my husband and I will be able to really relax once she sees the cardiologist (which will be every year), and know that her heart is okay.
Kawasaki Disease Foundation - INFORM YOURSELF
To top the rest of the month off, my other daughter had her tonsils and adenoids out 2 weeks after we were released from the children's hospital. I feel like for the better part of the month we spent in hospitals and doctors offices. So hopefully now that everyone is "better" and healing we can get back to a normal go of things.
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